Some of Epilepsy Futures Group 2 on their last session at the Mitchell Library
If you have been reading our blog posts, you will know that Epilepsy Futures is a Big Lottery Funded Project which is designed to build the self- management skills of people living with Epilepsy.
As the Coordinator of the programme, I don’t live with this disease, (though have my own long term conditions that I try to manage) so I can’t speak directly of how living with Epilepsy impacts on the self- esteem, self-image, self-confidence,and sense of independence that it has for those who do have this “label”
Steven Connelly, Peer Mentor and Group 1 graduate sums up the impact that self management skills have had for him
Over the years I have discovered the persisting and draining side effects from the cocktail of epilepsy medications I am taking. Undoubtedly the condition has its obstacles and hurdles still but there is light at the end of the tunnel.
After successfully graduating from “Epilepsy Futures” and the “Epilepsy and You” programme, I now recognise myself as a member of society, though looking back to this time last year (before I started on the course) life painted a very different tale indeed.
I am now a man who is relaxed, confident, proud and comfortable in my own skin. The road to get here was long, bumpy, and filled with long dark patches. I will NOT let the Epilepsy take control over me, my choices, my decisions, my dreams, my life.
How epilepsy impacts on different people
If you have always had the diagnosis of epilepsy, you may well have been denied opportunities that your peers during the usual teenage rites of passage.
If you lived an otherwise healthy life, building a career and identity only to get a diagnosis in mature adulthood you have to deal with the sense of loss that brings to you, as you adjust.
People living with epilepsy may also have other disabilities and conditions, which add to the way in which their lives are impacted.
Added to this is the stigma and fear, in ignorance and lack of understanding that people have about the condition and the lack of understanding of how living with neurological conditions can affect an individual.
By engaging with Epilepsy Futures, participants are opening themselves up to a six month programme of workshops, discussions and peer support where they gain a greater insight into what their condition is, how it affects them and crucially, what they can do to have a life with epilepsy, which allows for fun, new learning, connection to others and a greater sense of well being.
While building self -management skills will not “cure” your epilepsy, they undoubtedly help people to re engage with life and take better care of themselves.
This was highlighted once more by conversations group two have been having this week as they completed their 8 week block of sessions at the Mitchell Library. We have been going there to enable them to take part in the award winning “Epilepsy and you” online self-management course, developed by our friends at Epilepsy Action.
For most of group two, one of the biggest hurdles they faced in completing this course was their own anxieties about using computers and logging in to the system each week. it has been great to see people build their confidence over the eight sessions, and even if they never use a PC again, they have completed the course and can also continue to log into it for the coming year, to refresh their memory and educated other people in their lives.
What are we learning about self- management?
In reflecting on all they have been learning about self- management with the online programme and in the wide range of sessions we have organised to meet their needs (relaxation and stress management, trying skiing/cycling/walking, dealing with low self esteem, etc) the common feeling that was being expressed was that participants had gained more knowledge and insight into how to live with their epilepsy than they had ever had before, and that this insight had helped them to reach out better to other people in their own lives, helping them to assert their own needs.
Some of the learning points they came up with include
- The difference between being assertive and being aggressive when speaking to people about my epilepsy
- We all have different types of epilepsy, and it affects people in different ways – some have had to grow up living with it and manage the impact on their lives, others have had to adjust to a loss of a job/independence in later adulthood
- Gaining more insight into how other people are affected has given me more insight into myself, and increased my self-understanding
- I can have fun and live with my epilepsy
- I learned more about AED’s and think more seriously about the possible side effects they have, as well as what I need to do to work with them more effectively
- It’s important to set goals each week
- I’ve been talking to other people in my life more openly (e.g. my partner) about my epilepsy
- The effect it has had/is having on my relationships
Thinking about what they are doing differently as a result of what they are learning about self -management, comments included
- “I feel like the old me is coming back” – I am not holding back so much, and feel more able to be honest about how I feel/what I need and want
- “I can talk a bit more about my epilepsy and feel more comfortable doing it”
- “I know that there are reasons why I behave the way I do now – the AED’s and my epilepsy”
- “I understand side effects more…”
- “I am looking after myself better”
- “I have an agenda of items I wish to discuss with my consultant at my next appointment”